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THE DUCT
A Monthly Newsletter for the PSC Community
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PSC Partners continues to benefit from our CZI grant and participation in the Rare As One network. See article below to learn more about how this partnership is moving us closer to our goal of finding treatments and a cure for PSC! |
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PSC Partners Receives CZI Rare As One
Grant for Third Year in a Row!
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"Rare disease is anything but rare. As many as 7,000 rare diseases affect 400 million people globally. The vast majority are not well understood, and less than 5 percent have approved treatments. Yet worldwide, patients are meeting these challenges head-on. The Rare As One project is committed to uniting these communities in their quest for cures." -- Statement on CZI RAO Website |
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PSC Partners is excited to be a part of the Chan Zuckerberg Initiative (CZI) Rare as One (RAO) network for the third year in a row, which includes continued research funding, staff training, and collaboration with other rare organizations. CZI’s grant this year will help PSC Partners accelerate vital research, increase amplification of the PSC patient voice, support our launch of the International Collaborate Research Network, and more.
By including us in the RAO network and providing funding for our efforts, CZI is giving hope to the thousands of people impacted by PSC and significantly moving the needle forward in our search for treatments and a cure for this rare liver disease. We continue to be grateful, proud, dedicated members of the RAO community!
Click here for more information about the Rare As One Network initiative, including a list of the other organizations participating in this group.
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JOIN US FOR THE NEXT WEBINAR IN OUR
ROADMAP INITIATIVE SERIES
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Goals for This Webinar:
- Learn more about how patient data, like lab work and medical records, drive future research and drug development for PSC
- Discover how researchers and clinicians collect data
- Learn what it means to study the natural history of PSC
- Discuss how quality of life and patient-reported data are a critical component of PSC Natural History Registries
- Learn why your patient voice and participation in Natural History Registries are so important
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In addition to our three amazing speakers listed in the graphic above, we are excited to have a great lineup of co-facilitators participating during our interactive breakout sessions, including:
Dennis Black, MD, Le Bonheur Children’s Medical Center
Lisa Forman, MD, University of Colorado
Richard Green, MD, Northwestern University
Aliya Gulamhusein, MD, University of Toronto
Craig Lammert, MD, Indiana University
Kristel Leung, MD, University of Toronto
Jesse Kirkpatrick, PhD, MIT and Harvard Medical School
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Prepare for this session by reading this brief educational document:
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SAVE THE DATE:
March 23, 2022
Natural History 201
Power of the Patient Experience:
Translating Natural History Data into Research Breakthroughs
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ROADMAP INITIATIVE EDUCATIONAL MATERIALS |
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In addition to recorded webinars, PSC Partners puts together educational resources to accompany many of our webinars. While they were developed for pre-webinar preparation, these materials contain important PSC information to help our community stay informed and educated. Take a look:
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2020 PSC Partners Annual Report |
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PSC Partners Community Connections
with Host Rob Mottola
MEET
PSC Patient and College Student
EMMETT HALLORAN
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In the third episode of our Community Connections series, Host Rob Mottola talks with Emmett Halloran, a 21-year-old PSC patient and college student.
When asked about PSC Partners, Emmett says, "It's great to know someone is fighting for patients like us."
When asked what gives him hope, he says, "I lean on friend groups and my family so much. I just get so much joy from others."
Click the arrow on the graphic below to hear more from Emmett about his PSC journey.
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While you're there, subscribe!
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PSC Partners Patient Registry
A Presentation by Registry Director Rachel Gomel
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Each month, we highlight a video we think will be of interest to our community. During a recent ROADMAP Initiative webinar, PSC Partners Registry Director Rachel Gomel explained why patient participation in the registry is vital in the search for treatments and a cure for PSC.
"The PSC Partners Registry welcomes all PSC patients," she says. "In fact, that is one of the strengths of the registry."
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REGISTER FOR AN UPCOMING ZOOMROOM
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ZoomRooms
Are a Great Way To Make
Peer-to-Peer
Connections!
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"Thank you for a wonderful support group for the devastating disorder of PSC.
May a cure be found sooner than later, whatever it takes!" - ZoomRoom Attendee
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Have you joined a ZoomRoom, yet? These safe, open forums were started at the beginning of the pandemic to ensure our community members stayed connected and did not feel alone. They have been so successful that, even as the world is opening up, these virtual gatherings will continue. Attendees keep coming back, because of the comfort and support they feel when talking to others who truly understand what they're going through. If you haven't attended, yet, please consider joining. If you know someone who might benefit from a ZoomRoom, please pass along this information. |
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ZoomRooms and other events of interest to our community.
Help us keep our community informed by sending relevant events to PSC Partners! If you have an event you think should be added to the calendar, send information to contactus@pscpartners.org. Events will be screened for applicability to our community.
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The 9th Annual Cholangiocarcinoma Foundation Conference is February 23-25, 2022. You can attend in-person in Salt Lake City or virtually from the comfort of your own home.
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Yale University Liver Center is celebrating their Diamond Jubilee -- 75 years of academic hepatology! Anyone interested can sign up to join their virtual program.
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Welcome to Sandi's
Circle
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Sandi Wrote a Song...Won't You Sing Along?
Sandi enjoyed using songs and song titles to describe her PSC journey. In 2011, she wrote the following lyrics to the tune of Sound of Music's My Favorite Things. We dare you not to sing along!
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PSCers of all shapes and all sizes.
Having people here from so many different places.
Knowing that together a cure we will bring.
These are a few of my favorite things.
Laughter and sharing and tons of random hugging.
Nobody caring what body part your scratching.
Falling asleep anytime is A-Ok with me.
Loving what PSC Partners can bring.
Research and proposals and always fundraising.
Together awareness of PSC we are raising.
Power, Strength, Courage is what we will sing.
Today's efforts we hope a cure will soon bring.
When the liver strikes.
When the bills sting.
When I'm feeling sad.
I simply remember my PSC pals, and then I don't feel so bad!
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Folks who have been in the PSC Partners community remember Sandi Pearlman as a bright, positive light. Her insight, humor, and supportive presence were a real gift to those who knew her.
In this space, we share words of encouragement from Sandi and others.
If you have something to add to Sandi's Circle, send it to contactus@pscpartners.org.
Due to space limitations, not all submissions can be added, but we invite everyone to use this space to encourage folks in the PSC community.
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Workplace Giving is a Great Way to Support PSC Partners! |
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Payroll Contributions: Donating by payroll contribution is a great way to participate in your company’s workplace giving program! Ask your Human Resources representative how to enroll, or send them our way so we can answer any questions, contactus@pscpartners.org, 303-771-5227.
United Way: When donating via United Way, select “PSC Partners Seeking a Cure." Our address is 6900 E Belleview Ave., Ste 202, Greenwood Village, CO 80111.
Matching Gifts: Many companies match employee gifts to charitable organizations and/or volunteer time. If your place of work matches charitable donations, don’t forget to tell them about your gift to PSC Partners!
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Our Mission: The mission of PSC Partners Seeking a Cure is to drive research to identify treatments and a cure for primary sclerosing cholangitis (PSC), while providing education and support for those impacted by this rare disease.
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6900 E. Belleview Ave., Ste 202,
Greenwood Village, CO 80111
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